The 31st annual National Family Conference

We invite you to attend our 31st annual National Family Conference in magical Orlando, Florida. These four days will change your life.

We have hosted this conference for three decades for individuals who are affected by ectodermal dysplasias and their loved ones. You will receive the latest updates on research and treatment information. You will have the opportunity to participate in research if you so choose. Most importantly, you will connect with other families who share your syndrome, live in your area and who care about you.

It will be held at the beautiful Buena Vista Palace and Spa, which is directly across the street from Downtown Disney. All conference activities will be held in air-conditoned facilities.

You and your family will benefit in many ways:

  • Learn you are not alone.
  • Learn from stimulating discussions about medical and research updates.
  • Share personal connections with others who care.
  • Meet others to exchange ideas, support and advice.
  • Gain knowledge of products helpful to people affected by ectodermal dysplasias.
  • Be empowered to go home and make a difference.


Keeping Cool in Florida

Orlando is a great family destination so plan your vacation to coincide with the Conference. Many of you may be concerned about the heat and the humidty in Florida but all conference activities at the Buena Vista Palace and Spa are held indoors in climate controlled rooms. The only outdoor activity is an optional evening social in the outdoor swimming pool. Here are 15 ways to stay cool.


Hypohidrosis: How to Stay Cool When You Can’t Sweat

Conference Scholarship Process Now Closed

Deadline for Applications: April 13, 2012

The Scholarship application process is now closed. If you applied for a scholarship, you will receive a letter by April indicating if whether or not you received a scholarship.



The NFED has negotiated a sleeping room rate of only $109 per night.

The conference will begin on the evening of Wednesday, July 18 and conclude on Saturday, July 21 late afternoon.

The NFED has blocked a group of rooms at the Buena Vista Palace. The $109 per night rate is good until June 25th or until the room block is full.

To make your reservation, you may either contact the Reservations department at 1-866-397-6516 and tell them you are a part of the NFED Summer Conference or use this link to directly make reservations.


Early Bird Registration Is Now Closed

50 families registered by May 25, 2012, and were entered into a drawing to win one of three prizes.

1st prize – The Ann Russell Family won four evening tickets to Walt Disney World on Saturday, July 21st

2nd prize – Two Jodi Brown Family won nights’ lodging at the Buena Vista Palace and Spa

3rd prize – The D’Nella Anderson Family won one nights’ lodging at the Buena Vista Palace and Spa


2012 NFED Conference Registration Brochure

Ticket Offers from Disney

Highlights from the 2011 National Family Conference



(618) 566-2020